The sound of my alarm rings out beside me, silently I will it to stop… please, just 5 more minutes…
The lights flick on and I squeeze my eyes even tighter still, flinching away from the brightness. My uniform is laid out on the bed before me.
My coffee is thrust into my hands and I stumble out the door. Keys… lunch… handbag… I have everything… I think…
I can’t remember much of the drive but here I am, seated at my desk, the radio playing quietly in the background… only eight more hours…
My morning routine probably sounds quite normal, maybe even familiar? We’ve all had those days right? We stay up the night before watching “just one more episode” only to find ourselves regretting it horribly the next morning. But work is relentless, so up we get, at it again for another day.
Only, I didn’t stay up late last night, or the night before, and I certainly wasn’t up late the night before that. But the struggle continues… Every. Single. Day.
I never imagined that I might feel pride at just making it through a single day of work or that I’d be reliant on my partner helping me get ready each morning. I mean, 99% of days I’d have no lunch if he weren’t there making it for me. He even picks out clothes for me most days, a task that five years ago I would never have even fathomed I’d be incapable of. We’ve created our own normal, my partner and I, and I count myself truly lucky that I have someone there who is willing to act as my 24/7 carer should I need him to.
Having someone there to do the mundane chores of getting ready means I can save my energy (what little there is of it) for when I actually get to work, and so far it’s meant that (at least on most days) I’m able to make it through the long eight hour shift that makes up our standard work day. I’m also incredibly lucky in that I have an understanding management team. I made a point of sharing my illness with them right from the get-go (yep, I somehow found the courage to point it out in a job interview, and yep – I still got the job). That openness has paid off in ways I could never have imagined.
Last winter was an awful time for me, I seemed to be constantly ill, alternating between colds and flares and never truly giving my body a chance to “fully” recover. I’m not sure how many extra sick days I was given, but when I finally realised I’d taken more than my fair share and sucked up the courage to ask my boss about it he simply shrugged his shoulders and agreed I should probably take any future sick days as annual leave instead. It was no big deal, and in the words of another manager, “[my] health is more important.”
It’s been just over one year since I started my first ever full-time work position. The optimist in me had hoped that it would only get easier, that I’d get used to the routine and that waking up on time would become natural, perhaps even enjoyable, as it had done before I got sick. I hoped that I’d become accustomed to the early starts and be able to enjoy breakfast at the break of dawn, that beautifully peaceful time of day where the birds are singing, and everything feels right with the world. I wanted the eight-hour working day to be perfectly normal and to be able to look forward to fun-filled weekends.
But the reality of it isn’t like that at all. I don’t mean to be blunt, and please, if you are reading this and you are sick, don’t be discouraged. Nothing has changed. Nothing that is, except that I now work eight-hour days. I still rely on my partner to get me up and out of bed each morning, guiding me as I stumble out the door, dry retching at the slightest thought of food. By 11.00am I find myself staring aimlessly at the clock wondering if I’ll make it through another long and painful day and, more often than not, my evenings and weekends are spent resting, making sure I have the energy and stamina to do it all again the next day.
Like I said, don’t be discouraged. Despite all of this, my year has been a complete success. I made it through a whole year of work! Full-time work! I even scored myself a happy little promotion. I CAN do it. I CAN live an (almost) normal life. Of course, I need a lot more help than your average healthy human but as I said in a previous post… we need to compare ourselves to others in healthy ways, and reflecting on the past year, right now I’m pretty impressed with how I’m doing.
Do you guys have any success stories about managing your illness AND workload (whatever your “work” may be)? I’d love to hear them!